This blog is dedicated to my daughter Kayla, who was diagnosed at birth with congenital myotonic dystrophy. She spent 105 days from birth in the ICU, her first 9 months on a ventilator and using a feeding tube. The doctors did not expect her to live to see her first birthday but she is still here and keeps defying the odds, thanks to lots of love and care from her family, friends, and amazing therapists, teachers, nurses and doctors. This is her story...

Friday, December 30, 2005

Well, we have been truly blessed this Christmas. On Friday night (12/23/05), Kayla's Pulmonologist stopped by the house to visit Kayla and decided that Kayla was strong enough to begin trials off of the ventilator. Jeff and I were completely stunned by the news since just 3 weeks earlier he thought that we would have to wait until the spring to start taking her off. He said that he was so amazed at how strong Kayla was and how much she was moving that it was likely that she would do really well since her lung muscles were probably getting stronger as well. He also mentioned that her weight gain seemed very good and that would help to support her while she’s off of the ventilator burning more calories than normal. Kayla weighed in today at 14 lbs. 8.5 oz.

We started taking her off of the ventilator for 30 minute spurts a few times a day. Today we took her off 3 times. If she handles her trials well, then we can increase the time by 15 minutes every 3 days. So far Kayla has handled her first few trials well so we are hopeful that her progress will continue. The only changes that we see are in the amount that she needs to be suctioned when she is off of the ventilator. We are so ecstatic to have a chance to take her out of her room for these trials that we usually spend the time walking her around the house and showing her different parts of the house. It has been fun introducing her to the dogs who stay downstairs most of the time. When she sees them her eyes get so wide with curiosity. The dogs seem to understand what is going on and are very calm and sweet when she’s around them too.

Kayla has been moving more everyday and has really started to make meaningful movements with her hands. We bought her some ‘Brainy Baby’ toys for Christmas that light up and play music and she has learned how to hit the keys to make them play. It’s so amazing watching her learn and grow. What a little miracle baby!

Tuesday, December 20, 2005

Well, it’s unbelievable but we have already been home with Kayla for over a month. So much has happened since we left the hospital. It has been pretty overwhelming getting settled into our new routine but it has been wonderful to finally have Kayla home with us. Kayla is improving by leaps and bounds each day. We have so much to be thankful for and both Jeff and I feel so blessed to have Kayla in our lives.

Kayla arrived home on Tuesday, November 8, 2005 at 10:30 a.m. by ambulance. It was so incredible to finally see Kayla outside of the hospital. She looked so beautiful the first time the sun hit her sweet face. I rode in the ambulance with her while Grandma Jane and Jeff followed us in the car. I was overcome with emotion on the ride home and cried most of the way there. Coming home by ambulance wasn’t quite what we had imagined for her homecoming but it didn’t really matter at that moment, she was finally coming home.

Kayla began to show immediate changes the first day she was home. She was awake all day and was checking out her new environment with total amazement. Jeff’s brother Mitch and our nieces, Shelby and Lindsay, arrived that day for a visit from the East coast. They spent several days helping us out and loving Kayla up. It was so great to have them here with us to help us get settled in. Both the girls fell madly in love with Kayla, it was so sweet. Jeff and I really miss having them here with us but Kayla especially misses them!

Since Kayla has been home, she has been growing like a little weed. She has surpassed the doctor’s expectations in so many areas already. What an amazing little girl. Kayla was 10 lbs the day she left the hospital and today (12/20) she weighed in at a whopping 14 lbs, almost 10 lbs more than her birth weight. She is finally starting to put on a little baby fat and is filling in her long tall frame. Kayla is nursing like a champ. Her suck has gotten stronger every day and the doctors have begun to reduce her tube feedings slightly to keep her at the proper weight. We are hopeful that she will eventually feed solely by breast during the day although she will continue to be tube fed throughout the night for the time being. It is so amazing that she is able to eat by mouth while on a ventilator. What a little fighter she is! Kayla is now over 2 feet tall (25 inches to be exact) and is in the 97th percentile for height. It looks like she definitely got the tall genes from Jeff and me.

Kayla’s ventilator settings have not been changed since we have been home and her pulmonologist does not want to make any changes until the Spring. We are hoping that she will eventually get off of the ventilator but for now we are just focusing on getting through each day. The doctor isn’t sure yet when she will have her trach removed but it could be years so we are trying not to think about it too much.

So many of you have asked what life is like for us now that we are home. It is so wonderful but is still not completely “normal”. Kayla spends most of the time in her room and only is able to leave when several of us are available to relocate her equipment to another room. We sometimes move her to the TV room especially when we have to watch her overnight. We have been able to take Kayla out of the house 5 times now for doctor’s visits. It is quite a task to get her out of the house but it is so great to be mobile. In order to leave the house we have to take 5 different machines with us and an emergency kit so we have to be incredibly organized to successfully get out and be on time to the doctor. We have to take her ventilator and tubing, a backup battery (37 lbs), a suction machine to keep her lungs clear, a pulse oxymeter to measure her oxygen saturation and heart rate and a feeding pump to feed her. We purchased a special stroller to hold everything but didn’t realize just how heavy it would all be so we are looking into some other options to make traveling a bit easier. Kayla has 9 different doctors at the moment and then also has several other services such as speech therapy and physical therapy. One of Kayla’s doctors generously makes house calls and both her speech and physical therapy will be coming to our home for visits as well. We are trying to limit her exposure to sick kids so we are grateful to the doctors who make house calls or follow her by phone. The doctors have warned us to keep her healthy during the winter months so that we don’t land back up in the hospital again. They have also cautioned us that if she gets sick, she may not have the ability or strength to fight it off so we are being very careful with her.

Kayla made her first real baby sounds on 12/2. One of the hardest parts of having a baby that is intubated or that has a trach is that they can’t cry or make baby sounds. Kayla’s trach tube is placed below her vocal cords so no air passes by the cords to allow her to make sounds. We have never heard Kayla cry up until now. Kayla has somehow figured out how to get air around her trach and is starting to make small sounds. The first time Jeff and I heard her voice we both cried. It was the sweetest sound we had ever heard. We posted up a video so you can hear her. Kayla also began moving her head and neck on her own a few weeks ago. She is able to lift her head off of you if you are holding her against your chest. She is also able to turn her head from side to side now. This is a huge accomplishment since we have had to turn her head every 1-2 hours since her birth so that she doesn't get too stiff from sleeping on one side too long.

Jeff and I have begun to live our lives in 8 hour shifts since we have been home. The nursing shifts are from 7 am to 3 pm, 3 pm to 11 pm and 11 pm to 7 am. It feels like our doorbell is constantly ringing these days. We currently have about 16 hours of nursing care each day which leaves 8 hours a day where Jeff and I care for Kayla by ourselves. Sometimes we have only 8 hours a day of coverage and sometimes we have 24 hours a day so it really varies depending on the nursing availability. So far we have had to cover a couple of night shifts (11 pm to 7 a.m.) each week which is really draining. It is impossible to sleep for more than half an hour at a time on night shifts since the equipment needs to be maintained constantly. She has a humidifier on her ventilator that needs to be filled with water and suctioned out every 45 minutes to an hour. About once an hour, Kayla’s trach needs to be suctioned to keep her lungs clear. Every three hours we need to feed her with a feeding pump unless she is breastfeeding. And of course a fresh diaper every 1-2 hours. We also have to care for her trach site (or stoma) and her feeding tube (Mic-key button) a few times a day. On top of all of that, I am still pumping breast milk when I’m not feeding Kayla so as you can see our days are pretty full. With Kayla’s busy schedule we don’t have much free time to take care of ourselves but we are trying to make an effort to get out of the house every once in a while when we have nursing coverage. We have been very happy with the nurses that have been assigned to Kayla’s case. We were not quite sure what to expect when we left the hospital so we have been pleasantly surprised. Considering how much time we all spend together, it’s a good thing that we get along so well.

Over the Thanksgiving holiday, my brother Chris and my sister-in-law Dawn came to visit us from Maryland. They brought their 5 kids out as well but we couldn’t risk Kayla’s health so the kids all stayed in Santa Cruz with my parents and sister, Kathy. It was very sad to have the kids so close but not be able to see them. It really made Jeff and I realize what life will be like for the next few years. We had a great time with Chris and Dawn but ate way too much. Kayla joined us at the table but slept through the entire meal. This was Kayla’s first trip to the first floor of our house since we had her home.

Jeff and I have been working hard to prepare the house for Christmas since we will be spending the holidays at home with Kayla. We are looking forward to spending our first Christmas together as a family. So many of you have asked us what you can do for us. Jeff and I discussed it and feel that the best thing that anyone can do for us right now is to help fund research for Myotonic Dystrophy. Although Kayla may have a shortened lifespan due to her disease, we are hopeful that the recent research developments will prove to be successful in finding a cure in her lifetime. We are working on a plan right now to get more involved with the MDA (Muscular Dystrophy Association). If you would like to help, please donate to the MDA, specifically for Myotonic Dystrophy research, I have posted a link on our registry page. You can donate to the MDA, specifically for Myotonic Muscular Dystrophy (MMD, Steinert’s Disease), and make the gift in honor of Kayla. For those of you who are interested, her full name is Kayla Michele Vittek. Kayla is such an amazing little girl with such a beautiful spirit and has touched the lives of everyone who has crossed her path. Please help us help her by making a donation.

Well, that’s all for now. I promise to update the site more regularly now that we are getting settled in. We will be adding photos regularly so keep checking back.

We wish you all a healthy, happy holiday season. Thank you again for all of your continued prayers, love and support.

Myotonic Dystrophy Information and Support

Favorite Websites

Kayla's Milestones

July 28, 2017

12 Years Old

90 lbs. 5 ft. 4 in.

Kayla had a great 6th grade year and was on the honor roll all 4 quarters (with a full time 1:1 aide who helps to keep her on track and organized). Kayla is remaining really strong and just finished her 4th year in a research study at the University of Utah and might be in an upcoming clinical trial. Kayla still loves music and books and is reading pretty well considering all of her challenges. She's just amazing!

July 28, 201611 Years Old78 lbs. 5 ft. 2 in.Kayla is starting Middle School in 6th Grade soon. She went on a trip to Hawaii this summer thanks to Make-A-Wish! Kayla has a new step-dad, Paul who she loves so much. Kayla is growing up so quickly and is definitely turning into a tween.

July 28, 201510 Years Old75 lbs. 5 ft. Kayla is starting 5th Grade soon. It has been a tremendous year in terms of her educational progress. She really struggles with math but is consistently improving in Language Arts. Kayla is really excited to have a new soon to be Step-dad in her life and is preparing to be my flower girl for our wedding in September.

July 28, 20149 Years Old70 lbs. 4 ft. 10 in.Kayla is starting 4th Grade soon. It has been a tremendous year in terms of her GI problems. She is finally potty trained. (She's going to read this some day and be so mad at me for saying that). She still has lots of struggles but Kayla's a happy little girl who loves to read and especially loves music and dancing.

July 28, 20138 Years Old67 lbs. 4 ft. 8 in.Kayla is starting 3rd Grade soon. She still struggles with some GI issues, fatique, respiratory challenges and muscle weakness but she is doing pretty well overall. She loves to read and loves her friends at school.

July 28, 20127 Years Old65 lbs. 4 ft. 6 in.Kayla is starting 2nd Grade soon. She has made incredible progress over the years, I'm so proud of her. She still struggles with GI issues but is overall a happy, sweet little girl and has made several great new friends over the past year.

July 28, 20116 Years Old58 lbs. 4 ft. 3 in.Kayla is starting First Grade soon. She is talking in full sentences now. She is using 8-10 word sentences. She is reading really well although slower than average but who cares, she's reading! What a little miracle!

July 28, 20105 Years Old50 lbs. 4 ft.Kayla is starting Kindergarten soon. She is talking so much now, it just amazes me. She is using 4-5 word sentences. Her language took off as soon as we put her into an after school day care program where she is fully integrated.

July 28, 20094 Years Old48 lbs. 3 ft. 9 in.Kayla is starting her second year of pre-school soon. She is signing over 500 signs now and her comprehension is really good. She is still struggling with expressive language but is able to say two to three words together although her speech is hard to understand so we are looking into a communication computer so that she can communicate with her peers more easily.

July 28, 20083 Years Old40 lbs. 3 ft. 4 in.Kayla is walking really well now and hasn't used her walker in over 8 months.She is signing 250 signs now which is great since her speech is delayed.

July 26, 20072 Years Old35 lbs. 38 in.Kayla took her first steps independently two days before her second birthday. What a miracle! She's still using a walker but is getting stronger everyday and we hope she will be walking on her own very soon.

March 28, 200720 Months30 lbs. 36 in.Kayla is now able to walk with the aide of a walker although she is still a bit unsteady and is dinging up all of our walls in the house. She is able to communicate with us and has a signing vocabulary of over 25 baby signs. Kayla is also starting to communicate verbally more and can say up to 10 words now, including her new favorite word, "bubbles".

November 28, 200616 months27 lbs. 9 oz. 34 1/2 in.Kayla started pulling up to standing last week and started crawling today! Kayla can do 10 signs now and can say 3 words, Dada, Mama & Up.

October 28, 200615 Months26 lbs. 8.5 oz. 33 3/4 in.Kayla started walking along our couch this week! She still isn't crawling yet but she is well on her way. Kayla has been selected as the regional 'Youth Ambassador' for Easter Seals! That's my girl!

September 28, 200614 Months25 lbs. 5 oz. 33 1/2 in.Kayla's story was highlighted on the 2006 Jerry Lewis MDA Labor Day Telethon which aired locally in the Sacramento region.

August 28, 200613 Months25 lbs. 12 oz. 33 1/4 inKayla made her first attempt at real communication earlier this month and did her first 'baby sign' for the word "milk". YEAH!

July 28, 20061 Year/10 Months Adj24 lbs. 33 in.Kayla is 1 today! We had a huge celebration of her life with friends and family from all over the country. What an amazing milestone for a girl that wasn't supposed to live to see 1. June 28, 200611 Months/9 Months Adj22 lbs. 12 oz. 32 5/8 in.Kayla took her first trip on an airplane. On that trip to Florida, she took her first sip from a straw, something that doctors said she wouldn't likely do because of her low facial tone and open mouth posture. Go Kayla!

May 28, 200610 Months/8 Months Adj21 lbs. 8 oz. 31 3/4 in.Kayla is finally sitting up without any support. She has been completely ventilator free for almost a month now! YEAH!

April 28, 20069 Months/7 Months Adj20 lbs. 6 oz. 30 3/4 in.Kayla is almost able to sit up on her own and her head control is getting better every day. She still gets tired quickly but has such determination.

March 28, 20068 Months/6 Months Adj19 lbs. 14.5 oz. 29 3/4 in.Kayla is finally off of the ventilator during all waking hours and for short 1 hour naps. She no longer needs to be tube fed. Yeah! She is starting to coo and make all sorts of new sounds. Oh, and she rolled over on her own for the first time at the beginning of March! That's my girl!

February 28, 20067 Months/5 Months Adj19 lbs. 6 oz. 28 3/4 in.Kayla is learning to hold her head upright when sitting. She is also starting to roll from side to side on her own now. Kayla is off of the ventilator for 12 hours a day. January 28, 20066 Months/ 4 Months Adj17 lbs. 5 oz. 26 3/4 in.Kayla is able to lift her head slightly when on her tummy. She also started sucking her thumb and batting at her toys over her playmate. Kayla is now off of the ventilator for 8 hours a day.

December 28, 20055 months/3 Months Adj14 lbs. 4 oz. 25 1/2 in.Kayla started smiling more and for longer periods. She is also starting to come off of the ventilator for short 30 minute spurts, 3 times a day and is handling it well. GO KAYLA! We heard her voice for the first time on the 2nd. What an amazing experience after not hearing her make any sounds for 5 months.

November 28, 20054 Months/2 Months Adj11 lbs. 7 oz. 24 in.Kayla came home on the 8th and is showing huge improvements already. She began tracking people and especially loves her mechanical birds above her bed.

October 28, 20053 Months/1 Month Adj9 lbs. 4 oz. 23 in.Kayla began breastfeeding but is still being tube fed to keep up her weight. Kayla is getting stronger and might be able to finally come home in the next month or so.

September 28, 20052 Months Old8 lbs. 2 oz. 21 in.Kayla was diagnosed with Myotonic Muscular Dystrophy. She had a tracheotomy and g-tube surgery to help support her breathing and feeding. It's the first time we have seen Kayla without tape all over her face. She is so beautiful!

August 28, 20051 Month Old6 lbs. 4 oz. 19 in.Kayla is officially 1 month old today! What a celebration especially after the doctors said she wouldn't make it this far. She has such determination and a strong will to live. KAYLA, YOU GO GIRL!

July 28, 2005Happy Birthday4 lbs. 15 oz. 18 in.Kayla was born at Sutter Memorial Hosptial in Sacramento, CA by emergency c-section at 32 weeks gestation (7 months). Kayla was unable to breathe, move or eat by mouth and is on a ventilator and has a nasal feeding tube put in. The doctors said she has 'floppy baby syndrome' but haven't said much more yet.